To be so fucking angry, I might spontaneously combust!

[BlossomingIntoSpring]

Or at least burst a blood vessel . I am honestly shaking with rage!

Just found out the Local Education Authority have requested that Social Services engage an Independent Advocate for my adult DS who has ASD and a learning disability.

He’s 20 and has an EHCP which goes up to 25. He has had no placement since last summer as previous placement couldn’t meet his needs. Multiple previous placements have broken down. He has no independent living skills or qualifications.

He’s basically been sitting in his room in the dark for 10 months, up all night, sleeping all day. He now now has high cholesterol from lack of activity. He needs a residential college provision with MH support which I am appealing for as LEA wouldn’t name the one I wanted. The local provision they named in December still hasn’t started because they have no one to work with him.

I can’t believe the fucking cunts are trying to say I am not acting in his best interests!

I only found out after I complained to my MP about him having no provision!

I want to scream!!

I have been fighting for years for him to get a proper placement. His MH is shot. He has no life. Totally isolated at home.

He is very suggestible so will say whatever is suggested to him. as in he doesn’t want to live away from home. He does not understand the benefit for him at a college with an on-site psychiatrist, occupational therapist, speech and language therapist, a peer group, a structured day, social activities in the evenings and weekends. etc.

Some calming words please!

Excuse my language. trying to convey a little of what I feel .

[Not so blossoming now - shrivelled more like]

Yes I got him referred to the LD team. I had to show our GP their website on my phone! Took 6 months for a referral. They assessed him, said they could offer him MH support, last saw them last September…,,

Another one to say having an IMCA can be a really good thing.

I mostly see IMHA at work but they can really bust balls to get things done and ask difficult questions of services. They aren't affiliated with the LA.

They are not technically allowed to refer for one because they disagree with your views- it's a safeguard for your son to have another person to advocate for him.

@BlossomingIntoSpring
I’m also still working remotely and have 3 DC too.

I hear you. I hardly drink but have recently stopped as I need to be able to stay up late working at stupid o’clock. Please don’t do that.
I’ve only been on MN this week as I’m on Annual Leave.

Be kind to yourself x

On a simple level won’t it be because you’re fighting for a residential placement and he’s saying he doesn’t want to leave home? I’ve no doubt you have his best interests at heart and yes it sounds like a far better option for him to me but nobody can force him to move to or stay at a residential placement. They need to get to the bottom of what he wants and hopefully the advocate will have the skills for that

Independent advocates are really great. They aren't on anyones side and are literally there to act in the best interests of your son. Try and see it as a positive thing.

You are right op they are cunts. Why now as you say. Probably some kind od arse covering thing by them . Idk . I'm angry for you lovely. I'm sorry your getting fucked about and I'm sorry they don't listen and I'm sorry they do weasel back track moves. Nothing of use in my post i realise sorry but just wanted to offer solidarity . It sucks. Good luck x

to all the people saying “oh, but maybe…”, and “but surely!….”…

Please stop. Please just believe her.

She has lived this, every moment of every day for the last 18 years.

Yes, she might seem a little over combative, but so would you if you had been banging your head against the wall for the last X years, and then, suddenly, the education dept is asking for an independent advocate at precisely the time that she is making them explain themselves.

Do not kid yourselves. The world is full of people who would rather blame her than explain that their hands are tied. Who have left her in the pending folder for as long as possible because she wasn’t creating too much noise, and now need to cover their actions.

I don’t blame you. I wouldn’t believe it either if I hadn’t seen it myself.

Oh, and to those who say her son needs his own advocate. No one suddenly does a test to see if he has capacity to speak for himself. No one cared what he thought for the previous 18 years. But now? Now that it serves them to find a flaw in her plan. Now they want him to have an advocate.

I pray (and I don’t do that), you find the advocate gets it. That when they see how he is, what his days (and yours) look like, they will do everything in their power to get you the help you have been asking for.

Believe me, if the LA are being as recalcitrant as OP suggest, then the one person who will not be shy in exposing them and demanding explanations is a good IAW. The independence is vital for a number of reasons, one of the most prominent is that it empowers them to highlight and question injustice and inadequacy where and when it is encountered, free from fear of running into conflict with colleagues or people who have the means to silence them.

I've been an IAW for years and years, and invariably the only professionals I have come across who are hostile and unwelcoming of IAW involvement are those who know damned well that they've been half-arsing something or neglectful in their duty of care, and are running scared of being called out on it. The overwhelming majority of professionals are enthusiastic and welcoming, because they recognise that IA is often extremely helpful in overcoming obstacles, and enables a far smoother and more productive discourse between the people holding the power and the service user.

Again, the IAW may have been requested by the LEA, but they themselves are in no way beholden to them, and will not hesitate to call them out if they have been falling short in their duty of care.

This is the problem with SEN services, up to them being 18 you get support from neurodisability services & schools, the minute they turn 18 they are booted to adult services & have to go on a waiting list & get no support. Ds turned 18 in January, up to then we had loads of support & the day he turned 18 we got a letter telling us he was no longer a patient & adult services would contact us when he got to the top of the list but to expect a 2 year wait. Support should be to 25 like the EHCP is.

it sounds like a nightmare for you and for him. I'm so very sorry this is happening. It is disgraceful and inhumane. I'm so glad he has you in his court - nobody else seems to give a hoot.

Sending hugs your way, OP.

If you think there is a risk that someone will ask him questions stacked towards him giving answers that let them off their obligation to provide what he needs (ie so they don't have to cough up..)..

I'd try to get evidence, video a conversation between you?

It's a nice idea that everyone is out to support you but my experiences via a good friend say otherwise.

Friends child was according to medics, never going to communicate, walk, do anything - therefore, beyond carers, would need no educational anything at all... give up, don't bother, we certainly won't be.

Well friends child can walk, can communicate, can climb stairs, they are still profoundly disabled... but friend has, via methods not generally used traditionally, achieved wonders.

However along the way they have made some enemies, friend is very forthright, for example will not tolerate people attempting to physically manipulate DC or force them into accepting (they have taught DC to cope with and accept necessary medical stuff via positive reinforcement and TagTeach)... this has ABSOLUTELY led to malicious action in retaliation, the latest being that there is a safeguarding issue (triggered by friend raising a SG issue themselves!)

I have wandered off the point and that might be hard to read as I am trying not to make them identifiable, the point is what started out as trying to ensure that their child was provided the necessary access to education and appropriate medical support, has led to some shocking treatment, lies, deception and malicious accusations - from the very people who were more than willing to brush this child and their family off as a waste of resources, and leave the parents without support and the child uneducated and in pain.

Play the game.
Cover your ass.
Keep as much evidence as possible.

@Nat6999

The same thing happens in so many areas when the person involved hits 65 as well. From 18 to 65 they are seen by the same people and same departments and build up a rapport and understanding, then at 65 suddenly they are considered 'geriatric/OAP' and that is thrown out the window. Fortunately, for a while now a lot of Orgs have been fighting hard to retain their right to provide to over-65's provided the person in question has no obvious change of requirements that would make that inappropriate, and thankfully a lot of LA's/Trusts and so on are beginning to listen, but it still goes on and for the most part it's needlessly disruptive.

I would agree that whatever the LAs motivation for making the referral the advocate should be independent and they may well turn out to be a good ally. They are not there to push the LA agenda and usually they will not do that but on the contrary will take a pride in being truly independent
I work for the NHS in mental health and some of my patients have IMCA/ IMHA involvement and generally it is a very good effective thing for them.
They are 100% there for the person and they are good at communicating that they are not 'authority figures' but just there to listen and put forward the person's views. They usually have good training and experience and will not ask leading questions or take a first answer at face value. They will usually visit at few times and try to make a relationship with the person before writing any reports. It should not be a one off Zoom meeting.
Don't be surprised if they don't speak to you first though as they will usually not want to be influenced by any other opinions before hearing from the vulnerable person.
You may find that it's a good thing for DS to have someone else in his corner instead of just you.

Is DS receiving Legal Aid for the tribunal?

If the provision in the EHCP isn’t being provided you can complain and ultimately threaten Judicial Review in order to enforce it as the LA have a duty to ensure provision specified and quantified in F is provided.

Nat6999 if provision is specified and quantified in section F it must be provided regardless of waiting lists, even if that means the LA have to commission independent provision. If it isn’t being provided you can enforce the provision, via Judicial Review if necessary.

[quote BlossomingIntoSpring]*@Organictangerine, I am well aware you are people too. I have never kicked off or lost my rag despite extreme provocation until now. Just emailed very professionally outlining DSs rights, often ignored.

Can you believe they only just offered home tuition after 8 months with no provision after I got my MP involved. I suppose I should be grateful for that.[/quote]
I had to involve my MP to get home tuition for my child too.

It's exhausting.

@FrownedUpon

I think it’s a good thing. They want to know your son’s actual views, not his views as communicated by you. It’s important young people have a voice.

Theoretically yes. But some children like mine will agree to anything because they feel unable to disappoint people etc. they'll agree to anything whilst knowing they can't actually do what they've agreed to.

My child is only able to be honest via me.

I have nothing constructive to say but want to say I totally understand your anger and feel angry for you. It’s amazing how they all know best when it suits them and then you get “well you’re the parent, you know best” when that suits them, (usually when you could really use some outside expert help). Special needs support may have come a long way from 50 years ago but is still very lacking.

@BlossomingIntoSpring

Thank you *@Whatafielddayfortheheat*.

Really @Waterfordaston. The LEAs reason is that they are having getting difficulty getting his views and they are not clear. He has told them on a Zoom call I managed to get him to sit in for for all of 5 minutes, and his social worker, he wants to stay in education.

I remember being at a talk given by SOS SEN and they said that in a similar situation they arranged for a volunteer who was a specialist teacher to interview the young person separately to take his views. She was able to demonstrate that she modified her language and broke it down into short sentences to ensure that he understood exactly what was being asked, and certified that she was happy that this was his independent view.

It might be worth you arranging something similar?

@Imitatingdory

Is DS receiving Legal Aid for the tribunal?

If the provision in the EHCP isn’t being provided you can complain and ultimately threaten Judicial Review in order to enforce it as the LA have a duty to ensure provision specified and quantified in F is provided.

Nat6999 if provision is specified and quantified in section F it must be provided regardless of waiting lists, even if that means the LA have to commission independent provision. If it isn’t being provided you can enforce the provision, via Judicial Review if necessary.

This. They have a duty to provide the support set out in section F of the Plan. Putting pressure on them may well stop a lot of nonsense.

The trouble is, certainly for my young adult with ASD, that their condition means that they want all things to stay as they are. That is always their priority. If they are living at home, they want to stay at home because they are unable to imagine another option due to their condition, and if supported to do this, they usually prefer the known to the unknown. They may even be able to participate in a mental capacity assessment and explain back the pros and cons of residential vs home but will regardless say they want to stay at home due to the mental rigidity which is a feature of their condition.

You need highly specialist/trained staff to support with this, especially if the young adult can be articulate. Such people are very hard to come by. The risk is huge that someone will come and report that the young adult said he wants to stay at home and the authorities will say "there you go then, he doesn't even want to go to the very expensive residential placement."

It's like every day is an exercise in frustration. I didn't believe it until I lived it. So I understand why people who haven't had this experience think that an advocate is a super idea. (Effective advocates are worth their weight in gold - but the timing here seems very suspect).

I haven’t rtft so apologies if this has been said already but this is a worst nightmare of mine as I have a family member who is also incredibly suggestible and them agreeing to stuff it’s terrifying. There’s an order you can apply for from the court of protection - I think it’s called a deputyship?